In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Veronika Norén in Sweden as she describes the early childhood years of her daughter and recent diagnosis.

By: Veronika Norén, Sweden

On 25 June 2018, a beautiful little girl was born into this world. A petite little girl with a lot of dark brown hair and big almond shaped eyes. Maja.

From the start, we noticed that something was wrong when she “didn’t want to eat” from the breast. She had problems breastfeeding, so we were forced by the doctors to bottle-feed her. But Maja couldn’t even eat from the bottle. When Maja was 3 months old, she had her first teeth and started eating purées. 

We went to many doctors, and nobody knew what was wrong nor why she didn’t grow and thrive.  

In September 2019, Maja got her diagnosis of Wiedemann-Steiner Syndrome. Finally, we began to understand the reasons for her problems.

Many pieces fell in place. 

From start the doctors told us that maybe she wouldn’t start walking but she’s a true warrior. Today she won’t sit still, she runs and jumps around like any other kid! 

Maja was also born with a little hole in her heart, which can disappear as she grows, but it is a feature of WSS. She underwent surgery to close the hole in April 2020.

Despite all her struggles in life, she’s a wonderful and loving little person. She is happy most of the time and gives the most loving hugs in the world.

She truly is a blessing and we have learned so much from her. I think that our rare kids come to us for a reason. Our children will teach us more than we could ever teach them.

Every day is a new blank page in Maja’s book, and she will lead the way. Nobody else can say what the future has in store for her. There is truly so much to learn about this rare condition – Wiedemann Steiner Syndrome.

Maja is such a strong and brave WSS warrior!